Thursday 14 February 2019

Advice for new CHD parents. #CHDAwareness

My girls had open heart surgery to repair holes in their hearts in 2009. You can read our story here.

Finding out your child has a problem with their heart is the worst feeling. You step into a different, scary world with medical professionals firing words at you which you don't understand, the unknown and uncertainty. 

You are not alone!

Many parents have been in your position before and many will be in the future. CHD is the number one birth defect and problems with the heart is more common than you think! There is a wonderful, supportive heart community out there. Facebook was a fantastic help to me. There are groups of people going through what you are going through. I am still in the Facebook group for the ward where my girls were treated. New people join and the older members offer advice. It was such an amazing support to me.

Arm yourself with information!

 Learn about your child’s specific heart defect from reputable sites so that you can feel confident in the choices you make for your child’s care! Knowledge is power! Try not to Google the what if's. You will always find the worse case scenario.

Treat Your Child as “Normal” as Possible!

Don't baby your child. You can spend your time worrying and stopping them doing things or you can live in the moment. They are not broken they just have a little bit of them which doesn't work properly. I babied my girls. As soon as I found out about their heart defects I stopped them running about as much and worried myself senseless!

Take Care of Yourself!

I wasn't great at looking after myself when my girls were in hospital and suffered because I didn't. I ate about 3 meals in the 7 days we were in hospital and two of those meals weren't meals they were sandwiches. I snacked on crisps, chocolate and coffee which was not good for me.

Take the time to take a break. Staying beside the bed is not good for you. Get some fresh air, take a walk or just go and sit on the loo and have 5 minutes to yourself. The nurses will look after your child when you are gone!

I was proud of myself at one point. Becky had just been moved to the ward out the intensive care after surgery and Ellie was in surgery, I said to the sister on the ward that I can't do this. I didn't actually say I needed help but I was crying out for it. She got the support/counselor woman to come and have a chat with me and it helped a lot.

You are Stronger than You Think You Are!

You really are! You might not think you are but you are! It is OK to be sad, upset, angry and worried but that doesn't make you weak! You will get through this because you have to for your child. 

Every Child is Different!

It is natural to want to compare your child to another child with the same heart defect but they are not the same. Every child is different! 

My girls had the same heart defect, a hole in near enough the same place in their hearts but their surgery and recovery was so different. Becky struggled to keep her oxygen levels up and fainted a couple of days after surgery but on the 2nd day for Ellie she was bouncing around her cot wanting to go to the play room. I was having to practically pin her down to keep the drains and wires in her. lol

Take One Day at a Time

There will be good days and bad days, sometimes good hours and bad hours. Celebrate the positives and try not to worry too much about the negatives. Looking too far ahead can overwhelm you. 

Before my girls even went into hospital I worried about how I was going to cope with two in at the same time. I spent far too much time stressing about the what if's but looking back now it was a waste of time and energy. You can spend your time worrying or you can live in the moment!

Ask Questions!

Ask questions about what you don’t understand. There will be things which you don't understand. Our surgeon was an amazing man but he was so laid back and relaxed about everything. What was a huge deal for us was just every day for him. He skimmed over things and we asked him to explain things in full which of course he did. There is no such thing as a stupid question. 

Hearing that your child has a heart condition is devastating but remember that surgical outcomes in the UK are some of the best in the world and the vast majority of babies born with CHD survive into adulthood and live normal lives!


  1. my goodness, I'm so glad your girls are doing well. I can't even imagine how scary that must have been to cope with. Love this post. I'm sure anyone going through the same situation will appreciate it.

  2. Hi Kim, this is great advice for other parents of children with heart problems. Unless you have been there, there is no possible way to know how to handle it. We are stronger than we think we are and can cope with more than we think when we have to. Children are also far more resilient than we think, even if they don't bounce back from surgery right away, they cope far better than post adults ever would.


  3. Fab advice for families who are going through the same as you did back then with your girls. It must have been so very tough for you. I can't imagine the worry that this would bring.
    So glad that your beautiful girls are doing so well. x

  4. Such positive words for anyone reading this and faced with this condition - great informative post #MMBC